The Initiation of Long-term Ventilation: Lived Experiences of Paediatric Intensive Care Nurses

Background: There is an increasing population of children who are surviving with chronic critical illnesses, some of whom are dependent on technology to sustain life. Long-term ventilation (LTV) is frequently initiated in the Paediatric Intensive Care Unit (PICU) due to acute or acute-on-chronic events. Nurses with a constant presence at the bedside are well-positioned to offer a unique insight into the initiation of LTV in a PICU and the care needs of the child and family at this time in care delivery. Research into nursing perspectives in PICU is limited, most frequently focused on caring for children at end-of-life. Little is known about the voice of the nurse when life-changing decisions are made about children’s care in PICU. Aim: The aim of this study is to explore the nursing voice at the point of initiation of LTV for a child in a PICU. Method: This study used hermeneutic phenomenology, guided by van Manen, to understand the meaning nurses give to their voices during the initiation of LTV in a PICU. Semi-structured interviews were conducted with 13 nurses in Australia who had experience caring for a child during the initiation of LTV. The interviews were recorded, transcribed, and analysed as guided by van Manen. Findings: The phenomenon of the voice of the nurse is defined by three essential themes: ‘Initiating Long-term Ventilation’, ‘Complexity of Being a PICU Nurse’, and ‘Information Provision’. Within these themes, the existential lifeworld themes (lived relation, lived body, lived space, lived time, and lived things) were used to support understanding of the phenomenon. Discussion: The findings from this study offer further insight into the voice of the nurse in both the formal setting in meetings and at the bedside during the initiation of LTV. They highlighted that while formal meetings were the pre-dominant setting for discussions and information provision, they were intrinsically linked to care and discussions at the bedside. These findings expanded on existing literature to suggest platforms, including pre-huddles, for nurses to have increased involvement in discussions and decision-making. Participants emphasised that the nurse’s role was supported by building relationships with families; wider literature highlighted many benefits this could have for families. While both participants and the literature suggested continuity of care as an ideal model of care delivery for long-term families in PICU to support these relationships, it faced pragmatic challenges. Nurses also explored their role in information provision, particularly focusing on supporting families in processing the information provided and starting to build familiarity with the technology used to support their child through education. Conclusion: This study contributed to the TechChild project exploring the wider decision-making when LTV is initiated to sustain life. Nurses working in the PICU are continuously at the bedside, and exploring this has offered valuable insight into care provision during the initiation of LTV. This needs further exploration, but this study provides a starting point for better understanding the unique perspective of the voice of the nurse during the initiation of LTV.